Health Organization for Pudendal Education

Hey guys, I joined the site last night, and wanted to introduce myself. My name is Tom and I am 27 years old - I live in Phoenix, AZ but am originally from Chicago. I've been experiencing pain/discomfort/irritation in the perineal, scrotal and anal area for about 5-6 weeks now. I'm still in the process of being diagnosed - I have not been formally diagnosed with PN/PNE but we've ruled out a lot, and nothing else seems to mirror so closely what I've been going through. This has been a MAJOR shock to my system - I was a very active 27 year old. I was always exercising, working out, hiking, etc. Anything outdoors - anything active. And then all of a sudden, over the course of a weekend, I started to notice something that just didn't feel right. I was noticing a weird sensation around my groin - it was very hard to describe, and still is. My thighs/scrotum became very sensitive all of a sudden, and any light touch was uncomfortable. This was in addition to having pain sitting down for months, so I started to think something was up.

I've bounced around various diagnoses in my head - initially attributing all of this to internal hemorrhoids (my explanation for the discomfort sitting), and possibly a form of jock itch (without a rash.. or itch). After getting a couple internal hemorrhoids banded, and trying anti-fungal medication, I started getting worried. I couldn't find anything online that seemed to match up with what I was going through. Nothing seemed to make sense. Doctors seemed stumped. There was a part of me that wondered if this pain was manifested completely by my imagination - it was something I hadn't felt before. I got extremely depressed and wondered if I was going crazy. It just felt different than a normal ache or pain. I had a bad feeling from the beginning that this was something more serious - something more long-lasting.

I have scoured my brain trying to look for an explanation. Back in November, I had a pretty significant hamstring injury that required physical therapy. I was doing dead-lifts in the gym and remember feeling a "pop" sensation - my hamstring was shot for about 6 months, at least. Then, in May some time, I got sick and developed hemorrhoids from vomiting/dry heaving so much. This lasted for a month at least and was pretty painful. So, to me at the time, it seemed perfectly reasonable why I had been having pain sitting for months - I was going through a hamstring rehab, and then developed hemorrhoids, so it took me a bit to realize something more may be going on here.

I have some more scans lined up - but I don't believe they will show much of anything. We're currently in the process of ruling out obvious things. So far, none of the blood work or scans have shown anything out of the ordinary. A friend of mine whose mother is a physical therapist mentioned prudendal nerve entrapment as a possibility. This led me to doing some research, and ultimately led me here today. It felt like a lightbulb going off in my head, reading through the symptoms. Nothing else seems to match up like this. This has left me with a mix of emotions. On one hand, I feel a bit relieved just knowing I may be closer to a diagnosis - the ambiguity and uncertainty I've been going through has driven me crazy. On the other hand, I realize that in general there seems to be a lot of ambiguity about PNE and how to treat it, what to do, etc. I'm thankful to have found this website to give me some hope. I have sent my doctor a note for us to discuss this at my next appointment. Since it is still early in terms of my symptoms being there, does anyone have any advice? Anything you wish you would have done earlier? I don't want to do any more damage - I'm terrified of having to live like this forever. Any suggestions and support would be helpful. I know there are links to a lot of this in the site - I just haven't had the time to look through everything yet.

Anyways, not to go on and on. Just wanted to introduce myself. I hope to find some kind of relief soon. Thank you all in advance for taking the time to read this.

I can understand that dread of just not knowing what is wrong. Doctors always say "when you hear hoofbeats, think horses, not zebras." We're the zebras.
Also, if it does turn out to be PN/PNE, you're lucky to live in Phoenix (I do too!). We have two wonderful specialists, Dr. Hibner and Dr. Castellanos at St. Joesephs. The only problem is that I'm not sure if they're currently taking male patients. If they aren't, I'm sure they'll know someone who does.
I would schedule all appointments ASAP. There are a good amount of people with this problem, but only a few doctors, so it can take a very long time to get anything done.

Hope you get some answers soon!

lomlom wrote:I can understand that dread of just not knowing what is wrong. Doctors always say "when you hear hoofbeats, think horses, not zebras." We're the zebras.
Also, if it does turn out to be PN/PNE, you're lucky to live in Phoenix (I do too!). We have two wonderful specialists, Dr. Hibner and Dr. Castellanos at St. Joesephs. The only problem is that I'm not sure if they're currently taking male patients. If they aren't, I'm sure they'll know someone who does.
I would schedule all appointments ASAP. There are a good amount of people with this problem, but only a few doctors, so it can take a very long time to get anything done.

Hope you get some answers soon!

Thanks for the kind words. I noticed Dr. Hibner was nearby - I will try and get an appointment there ASAP, provided they are taking male patients. Interesting and good to know you're in Phoenix as well - small world!

Hi Tom,

Welcome to the forum. First thing is, I don't think you will have to live like this forever so there is definitely room for optimism. Also, you can have pudendal nerve irritation with pain and symptoms in the distribution area of the pudendal nerve without having entrapment. With your history of heavy exercise it seems like it would be important to see a manual therapist or physical therapist who specializes in the pelvis, including the mechanics of the pelvis, and who is experienced in treating patients with pelvic pain and pudendal neuralgia. A knowledgeable PT should be able to press on the pudendal nerve via the rectum to find out if you have any tenderness along the course of the nerve. They can also evaluate whether your pelvic floor muscles are tight and might be impinging on the nerve. If you started clenching your pelvic muscles during your gastrointestinal illness and got into a cycle of pain, maybe it's just a matter of getting those muscles to relax again.

The Nantes team came up with criteria to help distinguish between pudendal neuralgia that is caused by pudendal nerve entrapment (PNE) vs. other types of chronic pelvic pain or pudendal neuralgia due to other causes. You can read about it here. http://www.pudendalhope.info/sites/defa ... iteria.pdf

I had PNE that was caused by weightlifting, chronic ligament strain, and pelvic misalignment. The pain was much worse on one side than the other. Unilateral pain is one of the criteria mentioned by the Nantes team and is associated with PNE. I have a great life now although I do have to be careful to avoid certain exercises and activities. But not everyone who comes here has PNE so it's important to do a lot of research and get several opinions before making any major decisions on any invasive treatments.

Hopefully Dr. Hibner will be able to refer you to a good physical therapist in your area who can evaluate you. I think that is an important first step.

All the best,

Violet

Thanks so much for the note, Violet. That definitely makes me feel better. I'll contact Dr. Hibner and get a referral for a physical therapist and go from there.

I've called the offices of Dr. Hibner and Dr. Castellanos and they said they are not taking male patients. I was able to get them to email me some information about some other doctors that may be of some help. I'm getting very discouraged that it seems no one can help. She also said a lot of the treatments are not covered by insurance because they are "experimental". I'm not sure how to pay for this.. I can't just live like this forever.

I also just called Dr. Castillo @ Arizona Neuromodulation Center, and they do not take my insurance. So, another dead end there.

Dr. Attaman in Seattle seems to be in-network, and I've read good things about him. This may be my only option at this point. I would prefer not to travel but if that's what it takes..

Before traveling a long distance you might want to at least be evaluated by a physical therapist locally if you can find one who treats chronic pelvic pain who is in network. You could try the group at this link: http://www.pudendalhope.info/node/63#AZ

Is it possible to pay yourself but then submit the claim to your insurance company? You could check with your insurance company on whether this is a possible solution. Of course you would need to know ahead of time whether your insurance company will cover it.

Violet

Hi Violet,

I actually just saw a urologist yesterday that is saying it's "pelvic floor dysfunction" and he ordered some physical therapy with a pelvic floor PT. I'm hoping that is all it is as well, but we'll see how the PT goes. My mind has been kind of all over the place lately - but I'm really hoping the physical therapy helps.

I did ask about paying myself instead of going through insurance but was told Castillo does not take self-pay. There were a number of insurances he does accept - United Healthcare, BC/BS, etc.. just not Cigna unfortunately.